News from Doctors with ME

Unless explicit permission has been received I think a lot of people would respond negatively to their emails being posted on a public forum and being subjected to criticism. Yes Cassava has certainly tried to stay civil and respectful, I'm not trying to be too critical of anyone here.

It is useful to see the emails, so I'm not really saying this is a clearly wrong thing to do. But I think it's useful to try to be considerate of how people may feel about things

 

Dr Hng’s mail is publicly available from Doctors with ME’s website, which is where I obtained it. As for our correspondence, there is nothing that obliges confidentiality. I feel it is important for the community of patients to know what people who represent them (as I said, whether officially or unofficially) think of their feedback, and our exchange unfortunately shows that there is little consideration for it. This is why I posted it.

I should add that no personal information was shared at any point in our exchange (except once, on my end, in the last mail). Had it been the case, I would have asked for permission to publish it or redacted it.

 

It's not the first time we've had a self-appointed ME advocate charging off in their own way without reference to anyone else, ignoring other advocates, organisations and patients with decades of experience when they try to engage with them. It seems that when it comes to ME anyone can set themselves up as an advocate claiming to represent us and do whatever they want however they want. It's very annoying when they insist that they are helping whilst actually being something of an embarrassment. We don't need another saviour doing their own thing, impervious to feedback, insistent that it's for our own good. As if we hadn't got enough to deal with without the regular appearance of self-appointed loose cannons charging past.

 

Yes it is concerning how long this issue has gone on for. I hope they can listen to the concerns in this thread, and understand that people aren't looking to bully anyone - people just want to help Doctors with ME do better

 

Both Ramyar @InfiniteRubix and Nina @EducateME participated in the members only thread and welcomed feedback — until people became alarmed last July at very odd tweets. They stopped responding on the forum and wouldn’t engage on email. We would all certainly welcome their renewed participation here on forum.
https://www.s4me.info/threads/doctors-with-me-discussion-thread.20246/page-5

 

So Dr Hng replied to me, said it was a mistake and apologized. (And had also deleted the problematic post even before reading my message, after she realized the mistake herself.)

 

I received what seems to be a definitive reply from Dr Hng, in which I am told that she is open to feedback and has listened to mine but she does not agree with it.

Instead, according to her, “angry” patients on “unhealthy” online fora (which I understand to be S4ME) may well be turning this discussion into a “hate party”, which constitutes “cyber bullying”, and my “public attack” on DwME’s video causes great “harm” to them. For a reason that elapses my understanding, she also seems to think that I have been influenced by such patients.

Perhaps her most noteworthy point is that she thinks patients have a responsibility to support DwME, irrespectively of what they do.

Dr Hng’s reply (13)

My reply & addendum (14)

 

https://twitter.com/user/status/1540028138977099776

 

shouldn't this current discussion be moved to the members only discussion thread?
https://www.s4me.info/threads/doctors-with-me-discussion-thread.20246/

 

So many red flags...

One thing (of many) that I find very off-putting about this is how DwME seem to be distancing themselves from other pwME by referring to everyone else as a group of "patients".

They could have chosen to relate to Cassava7 as a fellow pwME or fellow activist/advocate, a peer who is working towards the same goals. Or simply as a person, an individual.

DwME are "patients" too, no?

 

Yes this DWME /= patients thing is a huge red flag, they are not OUR doctors, and I thought were marketing themselves as fellow advocates. Also, if they were our doctors, a few things they have said do not reflect best practice when it comes to respectful communication to, and about, patients.

ETA its not just distancing, its a power play

ETA.2 - there is so much irony and self contraction in the last reply I don't even know where to start.

 

Indeed.

It is not what other people are saying about her, but dr Hngs own attitude and words that make me lose confidence in the healthy and professional demeanor of DwME, or at least in hers.



I actually really like some of the the concrete steps DwME are taking and what they are aiming for. But the communciation around them really is appalling, and I think they should recruit a communications expert ASAP to get their good aims translated into solid communication around their views and planned actions, because this is, as others have pointed out, very embarrassing, and gets in the way of their effectiveness.

The link @Sly Saint just posted that leads to the latest post on their website, 'Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review', what is happening under the subtitle Replacing Working Group Glass Ceilings with Enforceable Minimal Standards (cringe, btw.), is a good illustrating example.

An example:

The text accompanying the video is delivered with the ususal bad use of language, among other things it says "We offer a simple 4-Point obligations, rights, risks and liabilities focused approach to achieve this." A good press release writer would then have given a short summary of these 4 points, and referred to the video for detailed discussion of them, but this text doesn't. Instead it keeps referencing the 4 point criteria, but as the reader has no idea what they are, they can't fully comprehend what it is DwME wants.

Also, things like: "Ensuring that the Working Groups consider every ME problem and solution in that 4-Point framework will empower all ME patients with specific rights that have been made immediately applicable to disease realities,..." are not sentences, nor does it make sense in content, and it's rather embarrassing that that can even easily be pointed out to them by someone who isn't from an english speaking nation.
They seem to have meant to say that the 4-Point framework will make ME patients aware of the rights they have, thereby empowering them to exercise those rights in situations that are related to their disease where they might get violated. Or that working according to the 4-Point plan has adherence to patients' rights built in and explicitly emphasised, and this means patient rights will be adhered to automatically when the Work Group recommendations or policies are applied in actual concrete situations, which benefits patients.

(Btw., the author really needs to work on how they use the word empower, it reminds me of an earlier comment of mine: " 'empowering someone with scientific rigour' sounds like a kink, not a policy goal" )

Communicating with professional parties does not mean you can just blurb out any old woolly, incorrect and grammarly challenged communication that sort of vaguely gestures towards what you mean. Quite the contrary, professional parties make use of communication experst to razor-sharply use language in a way that most benefits their interests, which in practise (e.g. in politics or industry) can mean throwing up a smokescreen of language, but there that is done on purpose, and still making sense when reading the sentences.


Edited 26/6 to make the start of a sentence say what I meant it to say. (Wrote it early morning and took a shortcut.)

 

I get the desire for in-group identification through the use of "business/legal language". But much of this is just obfuscated. It could be so much more effective. Honestly, just a bit of editing could both simplify and add impact to the messaging. Eg —

would have been better as —

I'm no expert like @Braganca and others here, but that seems to lead the eye so much better on both first read and when referring back.

 

Yeah, but you have to know how to do it. Now, if we are staying within Friends references, it's just "Joey speaking french", an attempt at mimicking instead of the real thing.

 

There are a lot of things that could be done better. The tone, verbiage and style shouldn’t get in the way of the message to such a huge degree. I’ve never seen any other org or charity put out the kinds of materials and posts that DwME do. It’s easy to avoid. Its possible the other directors do great work in this org that we are unaware of bc it’s all overshadowed by this issue. It’s also possible the person doing communications is really effective in other roles.

But the recent pieces are not the entire problem. There were issues with the way they define ME, inaccurate statements in their communications around the NICE guidelines. There were claims they made about helping ME patients get annual flu vaccines. There were these very long problematic threads on DwME Twitter account which quoted some of Richard Ramyars account.

Anyone who thinks this thread is unnecessarily attacking DwME needs to read the history. These are genuine concerns that could have been addressed.

It seems like one person is running the communications — this is an issue. That person seems to represent DwME entirely. Most posts and presentations are not attributed to a single author but seem to be under the umbrella “Doctors with ME”. It’s unclear if if means just the four directors or all the HFs. If communications that are this problematic are being attributed to either 4 or 21 doctors — those people should approve the message and content. It’s clear from Keith that he has not been involved in the content.

What was a slow simmering issue all last year has now become a bigger issue because DwME are saying “they” are involved at high levels of the new government effort to address ME. We all know that Nina Muirhead will do a wonderful job in any advocacy role, but the concern is who else is involved and how they will represent given this history of bizarre or not entirely accurate comms.

In the U.K. there is a history of people w ME being denigrated and misunderstood and accused of having psychological problems. How ME orgs communicate with other doctors, senior levels of government, the health department etc. is just vitally important. It’s everything.

@Keith Geraghty has made the effort to engage. He is a reasonable person with a great history of working hard for patients. Nina is the same. I would hope some of the honorary fellows could also engage on this, and work together on materials and communications or simply put out less if there isn’t a writer to help. What does it mean to be either a Director or Honorary Fellow with DwME if not to engage on the message and ideas put forward?

(I’m not going to comment any further on this thread since it’s all been said at this point).

tagging some Honorary fellows:
@Tom Kindlon @Brian Hughes @Chris Ponting